Welcome! We Are a Patient-To-Patient Support Community for People Living with Chronic Pelvic Pain.
Living with Chronic Pelvic Pain is a dedicated patient-to-patient support community for patients and families affected by Chronic Pelvic Pain. Living with Chronic Pelvic Pain is powered by BensFriends.org, a group of patient support communities for rare diseases, and is run by volunteer moderators who have been affected with chronic pelvic pain disorders. If you or your family has been affected by Chronic Pelvic Pain Disorders, consider Living With Chronic Pelvic Pain your second home. Living With Chronic Pelvic Pain , as well as the rest of BensFriends.org’s patient communities, is free for members to join.
Chronic Pelvic Pain is an Umbrella term to describe chronic pelvic pain including: Interstitial Cystitis, Endometriosis, and PolycysticOvary Syndrome. Chronic Pelvic Pain (CPP) is commonly defined as non-malignant intermittent or continuous pain in the lower abdomen, pelvis or intrapelvic structures, lasting at least 3–6 months. If non acute and central sensitization pain mechanisms are present, the condition is considered chronic, regardless of the time frame. Central sensitization is characterized by amplification or increased sensory perception, where stimuli that are normally not painful are now perceived as painful. CPP is in women not exclusively associated with the menstrual cycle, sexual intercourse or pregnancy, but is sufficiently severe to cause functional disability or to lead to medical care. Epidemiologically CPP has a greater incidence in women than in men, and is mostly present between the ages of 36 and 50 years. The etiology of CPP however is not clear. It can be difficult and complex to determine the cause of pain; in fact, no specific cause may be discovered. Many women are not able to identify a specific set of problems which can cause problems and allow for the diagnosis to be made. CPP may originate from one or more organ systems or pathologies and may have multiple contributing factors. It usually involves an interaction between the gastrointestinal, urinary, gynecologic, musculoskeletal, neurologic and endocrine systems. It can also be influenced by psychological and sociocultural factors.
This site is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
In 2007, Ben Muñoz suffered a rare form of stroke caused by an Arterio-Veinous Malformation (AVM). He was unable to find the support he needed during the most difficult time, so he created an online support community AVMSurvivors.org to connect with others like him. AVMSurvivors.org led to the founding of BensFriends.org, driven to provide patient-to-patient support communities for people living with rare diseases. BensFriends.org is a network of patient communities for people living with rare diseases. Launched in November 2007, Bens Friends provides valuable patient support by creating and running compassionate, responsive communities. BensFriends.org maintains dozens of patient communities and has changed thousands of lives. Bens Friends is supported by donations from its principals and community. You can learn more about BensFriends.org at http://www.bensfriends.org or watch one of our videos at http://www.youtube.com/BensFriendsVideos
Why create an account?
Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:
Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.
Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.
Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.
- Our New Ben’s Friends Classroomby BF_Writer on January 26, 2023
Clasina Field – November 1, 2019 You must be wondering what Seenie has been doing these days. Well, I’ve been building our Google Classrooms and library where our Moderators and Interns will be able to learn the skills and tricks of the Moderator Trade. Right now, I’m about to stock our library with reading material and things like Slide Guides. It will all be set up for independent learning, at your convenience. Of course, there are no grades and certainly no report cards. But there are […]
- Spotlight on Our Board Member: John Stamlerby BF_Writer on January 17, 2023
Ben Munoz – November 9, 2019 John Stamler, Ben’s Friends’ treasurer and a rare disease survivor himself, had a conversation with Garry Turner in the Episode 81 of Value through Vulnerability podcast. John shared his inspiring work as a mentor to startups and his admiration for the entrepreneurs he works with who are so passionate about what they believe in. He also talked about his experiences related to a rare heart defect which eventually led to his joining Ben’s Friends as a patient […]
- Ben’s Friends Members to Benefit from Cutting-edge Health Data Management Toolby BF_Writer on January 17, 2023
Sascha Gallardo – January 14, 2020 Members of Ben’s Friends patient communities can soon take advantage of a state-of-the-art technology that will enable them to manage their medical information in a secure multilingual digital tool, give them access to an online referral service for physicians and clinics, and let them participate in research that will benefit the rare disease community. Ben’s Friends is partnering with Backpack Health to provide a custom data management app to its […]
- Ben’s Friends Brings Learning About Patient Support to the Next Levelby BF_Writer on January 6, 2023
Sascha Gallardo – January 20, 2020 Ben’s Friends created a user-friendly online training facility that makes learning about providing support to patients simple and easy. Dubbed as Ben’s Friends U or Ben’s Friends University, it makes use of Google Classroom to create one virtual classroom for Moderators and another one for the Interns. Using this G-suite tool, the Ben’s Friends team is able to build a “library” of links to learning materials such as documents, websites and video […]
- Spotlight on our Member: John aka Jokhere from Living with Polyneuropathy Communityby BF_Writer on December 28, 2022
Sascha Gallardo – March 7, 2020 Polyneuropathy is often characterised by numbness, tingling sensation, burning pain and even paralysis of the hands and feet which can later on progress to the other parts of the body such as the arms and legs. This condition can be either acute, which appears suddenly but resolves slowly, or chronic which progresses gradually. It has different classifications such as the Guillain-barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), […]